Wow!  this has been pretty busy so far this year!  I have been helping out Compassion and Choices to do some talks about the importance of a specific Living Will WITH a choice of a good Surrogate who can speak for you if you are unable to.  I gave a presentation at the Herald Tribune in Sarasota FL a couple weeks ago.  For my talk I emphasized this and explained that after one becomes incapacitated, it is too late.  I also told the group that lying in an ICU bed is NOT desirable.  Do you know why?

First,  the longer you are in the hospital, especially the ICU, the bigger chance you will develop an infection.  Maybe someone does not wash their hands.  Maybe you are just so sick you cannot fight off the bugs brought to your bedside.  Second, we now know that even after the short time of 48 hours, people are likely to develop Post-Intensive Care Syndrome (PICS).  What is PICS?  It is where you get out of the hospital, and now have post-traumatic stress disorder (PTSD)...yes!  Just like our Servicemen and women get!  And also, you are likely to develop Alzheimers-like symptoms where you are unable to remember and think clearly.  Many people who have been seriously ill in the ICU never go back to work because of these things.  Third:  Do you have any idea what kind of costs you will be racking up lying in that bed?  Just consider:  an ICU bed (just the bed, no meds, no treatments, X-rays or ANYTHING else!!!) costs about $7000.00 per day.  Multiply by a week or 2!  Yes, you might be lucky to have insurance that covers 80% of those costs, but YOU will need to cover the rest.  How many people have $50,000. or more of disposable income to pay the remainder?  Not many.

So, advice, needless to say is to talk with your family.  Think about: What is valuable to me?  Would I be happy to never golf again? What about never playing bridge?  What about never being able to hold my grandkids?  What about never eating normally again?  These are your values.  You should think about theses things so YOU can make your own choices and consider your values.  Today is a good day to start!

Confusion Between Palliative Care and Hospice Care

Last week I was caring for an 84 year-old gentleman who had been battling colon cancer at home.  His condition worsened and he ended up in our ICU after having major abdominal surgery.  He had never had palliative care, which would have been a benefit since, at his age, he was unlikely to recover to his previous level of function.  Now that he was even more deconditioned, it was appropriate to discuss palliative care for him.  I found this article, written by an Emergency Physician in California which helps clarify supportive care at the end of life. 

Clearing palliative care confusion

•    Story


Posted: Friday, February 5, 2016 6:40 pm

By Terry Hollenbeck MD

There seems to be some confusion when it comes to understanding the difference between palliative care and hospice. They are both distinctive medical disciplines and often work together.

Hospice care comes into play when a patient has a terminal illness and all treatment options have been exhausted. It is really for those who have been determined to be in their last six months of life. The goal of hospice care is not to cure the underlying disease but to support the quality of life. Hospice care maximizes comfort for terminally ill patients while also addressing physical, social and spiritual needs.

Hospice care is most commonly provided at a patient's home, with a family member typically serving as the primary caregiver, but, it is often available in facilities. The hospice care team is usually available 24 hours a day, seven days a week.

Palliative care is medical care based on the goal to relieve pain and suffering, reduce symptoms, ease stress, and mainly to improve a patient's quality of life during a serious illness and is not limited to end of life issues. People who are actively being treated for a disease can receive palliative care at any stage of their illness whereas hospice is thought of as end of life care.

This is an important distinction because many people think of palliative care as end of life care. The palliative care team works closely with the patient's primary treating physician in caring for the patient. While the patient's treating physicians may be trying to prolong life, palliative care's goal is to maximize quality of life.

Identifying and managing pain is one of the main priorities of any palliative care program. Palliative care also seeks to improve many other troublesome sources of physical discomfort such as shortness of breath, constipation, and insomnia.

Happy New Year!

Happy New Year!

Here we are already in 2016!  Time flies, and we are yes, admit it! One year older!  So I reflect on some very positive things from 2015:

As I mentioned before, I was invited to present a talk at the World Nursing Conference in Dubai.  It was very interesting, for one, to be half way around the world!  And also in a completely different culture!  As nurses, we all have many of the same concerns for better healthcare and improved lives of those we care for.  And as such I am thinking that it is never too soon to think about whether we have had those discussions with our family members about our wishes should a catastrophic event or illness occur. 

I recently did a talk at our local library in Michigan about considering your wishes if something occurs, and what to consider and why.  Keep in mind that we always think ‘It won’t happen to me,’ or ‘I’m too young to consider what I’d want if I cannot continue the life I have now.’  But it is NEVER too soon to think and talk about these topics, as hard as it may be.

You do not want to have these things happen and you have not discussed your thoughts and wishes with anyone.  Trust me, it is something I see very often at my hospital.  And it is too late of you cannot communicate.  So please, think about this, read some of the questions I have here on the website and  ask a healthcare professional or your doctor to help you understand.

Have you Thought about 'What If?'

I recently had a social event along with  my neighbors. We got around to talking about ‘What If’ scenarios because we were discussing our age.  It seems everyone thinks nothing is going to ever happen to them that is bad unless we are very old.  Of course, bad things happen to good people every day.  I mentioned to my neighbor. ’If only we had a crystal ball!’  Well, we don’t.  I asked if they had a Living Will, or as some call it, ‘Durable Power of Attorney.’  My friend said, well, it’s terrible!  We don’t even have a will!’  Of course, we all believe nothing ever will happen to us so we put off these things.  And we take life for granted!  And...we're busy.

I asked her, ‘What if your husband here got into a serious car accident and was paralyzed, needed to breathe on a ventilator for life and get fed with a feeding tube?’  She shuddered and said she didn’t like talking about it. I also asked: ‘What if he was comatose in an ICU and was not likely to survive, would he want to continue to live, even though we may have no idea the pain he might be in?’   This seemed to give them food for thought.  Well, they are not alone.  Her husband acknowledged that these discussions are probably valuable to have.  I supported him on that thought.

So if you have not given thought to things like these, today is a good day to start thinking about it.   Think about this:  You are the patient in the bed, in pain,  not likely to survive, and you cannot tell anyone.  Nor have you ever talked about these things to any of your family.  You think it can’t happen to you?  It happens every day to good people.  Think about it.  Talk about it.

Wow!  It’s been a while! I am still busy practicing at the hospital, learning and observing.  One of my goals each day I work is to chat with the family of my patient and understand what they and their family member really wants.  Often I am dealing with elderly patients.  I know we all think we’ll live forever, but like a machine after many years, we wear out.  Even though we have many tools we can use to help people get better, or get ‘over the hump’ of surgery, sometimes it is just too much for us. 

So what should the considerations be then?  First and foremost, there should be little or no pain and suffering.  Problem is, we cannot often talk with those that are seriously ill.  They can’t tell us they are in pain.  So that’s all the more reason why we should think it through and consider the reality of the situation.  This is where an expert Advocate comes in.  This is where we should talk about end of life comfort, or the possibility of recovery.   Frank discussions of medical possibilities, or none is paramount here.  So talk about ‘What if” scenarios with your family.  It is difficult, but important.  Would you want to be in pain, unable to recover but unable to tell anyone?

I’m also delighted to mention I have been invited to speak at the World Conference on Nursing in Dubai this month!

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Have you had conversations with your family about your end-of-life wishes?  Dying with dignity is a part of life well lived.  Most seriously ill patients are unable to express their wishes and also are unable to communicate any suffering at the end of life.  In more than 88% of doctor-patient- family conferences during serious illness, there was no conversation about the patient’s own values and wishes. (Critical Care Medicine April 2015).

Decisions about using life support (breathing machines, dialysis, transfusions etc) usually hinge on trade-offs between the length and quality of life.  And they are influenced on the person’s understanding of their expected level of function, independence and comfort.   But most people who are critically ill are incapacitated and therefore the family members try to make the decisions for them.  So does your family REALLY understand what you would want?  And do you understand the implications of the life-support treatments?

You can be comfortable and have your wishes carried out but only if you take the right steps now.  Talk with your family.  We all will die, but some of us will have a plan in place to die in comfort.  You can too!